It was 2010 when Sam Maddox, our Knowledge Manager and resident SCI Science guy at the Christopher and Dana Reeve Foundation, CDRF, asked me to consider being a member of the yet to be formed, blog squad. He felt I had something to say, I felt intimidated and scared. I didn’t think too hard about Sam’s request, I signed on and never looked back.
My belonging to this squad has benefited my life path in ways too numerous to count, I am blessed to be a part of this community. Back in the old days, there were seven of us and each of us personally named each of our blogs when we went live. Now the squad is under one heading, Life After Paralysis and we six writers. We lost Laura Hershey
in our first year, from a sudden illness. Her self-titled Life Support blog had ten “sit up and take notice” postings in it.
I’m writing about Laura because Life After Paralysis (LAP) is moving to a new platform and she is coming with us. When the move takes place her blogs would have disappeared from the Reeve Community and we can’t let that happen. In reality all of the blogs written by the blog squad prior to LAP will disappear from the mix. It’s up to each of us to retrieve our words, comments and such, if we want to preserve what was in that space.
When Laura died there was much written about her life, work and loves. One stand out for me hits home, it’s written by Cory Silverberg. “One of the things I appreciated most about Laura's writing is her ability to write from a place of hope and pride, even when talking about the darkest parts of our human experience - suffering, isolation, shame, fear - without ever minimizing the pain or injustice. She was able to shine a light on things in such a way as to never wash them out, but simply allow them to be seen and understood more clearly, felt more acutely.”
Sadly for me I never had the opportunity to meet Laura up close and personal. I resonate with Cory’s words “felt more acutely” because reading her words frequently left me with the feeling of opening the front door to my home and being smacked up side my head with a blast of searing heat engaging my fight or flight response. I don’t use absolutes very much when I’m speaking but here I make an exception, every time I wanted to slam that door shut and back away. She pushed me hard and I loved it.
Laura described herself this way for the CDRF blog squad introductions, “I'm a writer and poet, also a consultant and trainer, specializing in disability rights, health policy, and community organizing. I'm an activist for social justice, particularly disability rights, and for economic justice, including the rights of home care workers and other people whose labor supports our independence.” She also was an artist, (check out her The Pantheon of Hero’s) friend, lover and a mother. Please take the time to read her resume, tour her website and read her final book, Spark Before Dark
I’ll get out of your way so you can read her words in just a moment. I have two more things to share that Laura wrote that have meaning for me. After reading her first blog squad submission, I plunged into Laura’s vast body of work. A Laura quote “We have to demand the things that are essential to our lives, equality, and quality of life…We must refuse to feel gratitude for these, except the normal level of gratitude that anyone might feel for living in a time and place that still supports human life.” And a line from her poem, “Honor.” “Do I present
too great a challenge
to your ability to honor
as your equal?” Thank you Laura Hershey for honoring us, you are missed but not forgotten. Here are Laura's blogs.
A Note on This Blog's Title
Why "Life Support"? To me, this title carries several meanings. I, like many other myth-defying folks with disabilities, love life in all its complicated weirdness -- and I see nothing wrong with using and insisting on the various supports that make my life possible. For me, these supports include attendant services, a sip-and-puff power wheelchair, a mechanical ventilator that helps me breathe, and a voice-activated computer.
I sometimes hear the words "life support" spoken with negative undertones. People talk as if oxygen, respirators, feeding tubes, and other life-sustaining equipment must always detract from a person's humanity and quality of life. I'm here to make the radical claim that for many of us, such connections actually enhance health, independence, and happiness.
And finally, this blog itself will support life as a political right and as a topic of interest to people with disabilities. As a grassroots health care rights organization once proclaimed, we do have "lives worthy of life," and should not be denied treatment based on either cost concerns or on society's discriminatory attitudes. And since many of our fellow citizens believe we're miserable wretches, I will as a writer commit the powerful act of sharing our daily life stories, which prove that our lives are fun, difficult, diverse, productive, connected, hilarious, heartbreaking -- and as deserving of support as anyone else's life.
Copyright 2010 Laura Hershey
The Stories Begin ...
As I begin this new gig, writing the blog "Life Support" for The Reeve Foundation, the life of the world itself seems in a perilous state. Wars rage, oil plumes spread, whales die, politicians sneak and bicker, businesses pillage, and journalists mostly miss the point.
My own community faces similarly ominous circumstances. Most alarmingly, people with disabilities in California, Illinois, and other states are facing potentially devastating cuts in home care services. When these cuts hit, many people will struggle to survive and function. Some, unable to get by with less help with daily activities, will get sick and be hospitalized, or be forced into nursing facilities -- either outcome ironically costing taxpayers more money.
So what's a blogger to do? Post cries of help? words of warning? action alerts? missives of gloom and doom? Any or all of these may be necessary at times. But I also hope to something different bring to this column: hopeful energy, excitement, even -- dare I say it? -- joy.
I have plenty of personal reasons to sing. I enjoy a fruitful writing life. I have fantastic friends, near and far. My partner and I recently celebrated 20 adventurous years together. We've made a comfortable home, and adopted a daughter, while also finding ways to work for peace and justice and inclusive communities, and against assisted suicide, inaccessible buses and buildings, and the Jerry Lewis Telethon's lies about life in a wheelchair.
In this space I will certainly report on important advocacy issues and -- be ready -- I'll urge you to get involved.
But I also hope to be the bearer of good news -- starting now. Here are a few recent developments that hearten me:
Our people are fighting back. Home care clients and workers are joining together in dramatic demonstrations against their states' service funding cuts. Several dozen Californians have established ArnieVille, a temporary encampment on a traffic median in Berkeley. Each day since June 22, they have rallied, held press conferences and workshops and concerts, distributed information, and lived with uncomfortable conditions and group solidarity. They will not go gently into those nursing homes.
Even in crisis situations, our people rise from the rubble to assert their rights. For example, many newly disabled Haitians, including amputees resulting from earthquake damage, are insisting that international relief agencies listen to them, and provide services appropriate to their needs. They are also challenging their society's traditional stigmatization of disabled people, becoming more visible and more vocal.
Our people are remembering their history. The University of California's Bancroft Library's Disability Rights and Independent Living Movement (DRILM) collection has gathered numerous recordings and transcripts of oral history interviews with our movement's leaders. Another project, It's Our Story, is collecting in-depth video interviews from disability rights activists around the country.
Resisting oppressive rules and systems, our people forge strong and loving relationships as lovers, partners, parents, and communities. On the same June day that my family partied to celebrate our adoption, our friends Nick Dupree and Alejandra Ospina held a commitment ceremony in Central Park, which doubled as a rally against the rules that penalize disability benefits recipients for getting married.
Remembering John Callahan
John Callahan (pictured) passed away last week at the age of 59, after decades of making us laugh (and sometimes cringe) at his twisted visions of the crip life. Many of us will never forget some of his cartoons -- drawings short on detail and nuance, but packed full of irony, cynicism, cultural commentary, and weirdly realistic surrealism -- and his autobiographical writings. Callahan made us think and giggle, through the magic of profound discomfort.
Callahan's cartoons were never politically correct. He certainly riled my feminist ire at times with his crude tits-and-#### caricatures. But he made me laugh -- and still does -- with his bizarre scenes and encounters. He put disabled people in completely unexpected situations -- like the guy with a white cane, spraying Braille graffiti on a brick wall. You look at this for a minute, and then you crack up. You can't help it. It's a blind tagger! It's funny.
Even more hilarious and subversive are the cartoons featuring disabled people in situations familiar to us all, but with some kind of unexpected and shocking difference. Example: A nondisabled man looms over a man in a wheelchair. Burning with religious fervor, the first man raises his arms and commands: "HEAL!" In response, the disabled man jumps out of his chair, to the ground, crouches on all fours next to the "healer," and looks up at him, tongue hanging out like a dog's. On one level it's just silly. On another level, though, it says so much about the power relations between people with and without disabilities, their desire to cure us, and our desire to please them.
(You can see, and get, these and other Callahan cartoons on his official website.)
I think my favorite one of all time showed a bunch of vent-dependent quads -- people stretched out in oversized wheelchairs, with prominent tubing, like a bunch of Ed Roberts clones -- in an adapted aerobics class. The instructor commanded: "O.K., let's get those eyeballs moving!"
Even more examples of Callahan's art and writing are currently being featured in some high-profile obituaries, such as the one in the New York Times. Perhaps the best remembrance, also featuring his cartoons, is in the Willamette Week in Oregon, which has published his work for decades.
Humor, it's often said, has healing properties. I don't think Callahan was trying to heal himself or his readers, at least not in the "get better" sense. I found his humor liberating -- breaking through the niceties, tossing away the "how to talk to the handicapped" etiquette manuals. His stories laid bare the truly strange things people say to us, the weird images that pop into our heads late at night, the awkward encounters that our diverse culture makes possible.
You can't summarize a joke, anymore than you can summarize a poem. You just have to be there, see it for yourself -- and give way to that gasp of horror, of indignation, or of gut-deep recognition. If you haven't seen Callahan's work, seek it out -- and deal with it.
Copyright 2010 by Laura Hershey
Remembering Two More Heroes
In a blog called "Life Support" I don't want to spend too much time writing about death, but lately the disability community has lost some good and important people. I don't want them to die the second death of being forgotten.
Last month I paid tribute to Callahan the cartoonist. Since then we also lost an outstanding disability history scholar and advocate, Professor Paul Longmore. You can read or hear NPR's brief but good obituary here. You can watch this compelling video of Paul's July 26 speech about the disability rights movement.
Longmore was no ivory-tower academic. During the last weeks of his life he enlisted in the resistance to what he called Gov. Schwarzenegger's "unconscionable war against people with disabilities," that is, the budget cuts in home-based support services. He was proud to be part of the disability rights movement, and he contributed an enormous amount of energy and knowledge to help fuel it.
Paul has gotten lots of posthumous props, all well deserved. I'm going to focus the rest of this post on someone who's received far less attention -- maybe because she didn't travel and lecture as much; or because she lived in a small town in central New York, which doesn't possess the cool crip cachet that the Bay Area has. Or because she was a woman, and sexism is alive and well both in the US news media and -- yes, I'm going to say it -- in the disability movement.
I'm talking about Barbara Knowlen, who passed away on July 24 at the age of 69. I first learned the news about six weeks later, in an e-mail from someone I don't know. The writer, a disabled woman, was asking for help with a Social Security work incentive program called "PASS," which is designed to let disabled people try employment while keeping essential benefits. Barb had been helping her until her death, and now she was at a loss. "She was the only sharp, knowledgeable, and gutsy person I knew I could rely on to do battle with SS," she said of Barb.
That's the kind of thing a lot of people said of Barb. When it seemed that no one else could cut through the thicket of contradictory regulations, misinterpreted guidelines, suspicious administrators, and bureaucratic bullying, Barb could do it. She knew the rules inside and out, and she could argue forcefully.
Barb was a T1 paraplegic who also had multiple sclerosis. In the 1980s, she worked in the independent living movement in Missouri and Oklahoma. Then she decided she wanted to start a business designing and selling advocacy posters and other products and service. She encountered opposition when she asked help from Kansas Vocational Rehabilitation. They tried to use the rules to limit her choices; she taught herself the rules and beat them at their own game. Based on that experience, Barb wrote a consumer manual aptly titled "How to Kick #### and Win."
From that time on her company, Barrier Breakers, continued to sell posters, but also provided information and, increasingly, direct advocacy, to support people in achieving their work goals using Vocational Rehabilitation and Social Security benefits. To get an idea of her services, attitude, and approach, check out the archive of her Barrier Breakers website.
Barb also stayed involved in other disability advocacy issues like ADAPT, independent living, and medical discrimination. In a notable exception to the lack of online tributes to Barb, Stephen Drake devoted a recent edition of his "Not Dead Yet News & Commentary" blog to talking about some of these other aspects of her work.
Since 1994 and Barb had been helping people write "PASSes" -- Plans to Achieve Self-Support -- which allow SSI recipients to earmark any extra income (earnings, SSDI, family contributions, etc.) for expenses they need in order to work or get ready to work. Those "set aside" funds then don't count against their SSI eligibility. That means a person can work toward a dream job (as long as it's "feasible") by paying for training, an adapted computer, a lift-equipped van, or whatever, all while continuing to get a monthly SSI payment and, more importantly for most people, Medicaid coverage.
All of this has to be approved by a series of bureaucrats, of course, and some of them just love to say no. That's why Barb didn't just write a PASS, she stuck around and fought for it. She did this for people all over the country. I always admired not only her effective advocacy for her clients, but how personally she seemed to take it when SSA messed with them. She would describe a client's circumstances, highlighting how hard they were working and how much they deserved the opportunities they were seeking. She was indignant that anyone else could fail to see the plan's or the person's merits, which were so clear to her.
Just two years ago, she helped a friend of mine here in Colorado deal with a hostile response to a perfectly reasonable proposal. Before Barb got involved, my friend was at risk of losing her job offer, her savings, and her hopes for success. When we finally called Barb, she transformed the situation. She pushed past the problem bureaucrat, got to the right people at SSA, and made a strong case for my friend's plan based on the rules and intent of the PASS program. She kicked ####, and my friend won.
Copyright 2010 Laura Hershey
Roughing It, Accessibly, in a Colorado Yurt
Summer's almost over, and I haven't done everything I wanted to do, but I did manage to go camping. Aside from being a lot of fun, that was an endeavor that I can count as a major accomplishment, given the amount of planning and coordination involved.
I know a lot of outdoorsy people who would scoff at that claim. They wake up some mornings and think, "I'm going camping," and they throw a toothbrush, a change of underwear, a canteen and some dried food into a backpack, and off they go.
But when you have a disability like mine, pretty much nothing works that way. For any kind of traveling, especially for camping, you have to plan a lot. One of the great things about camping is that it means many different things to different people. For some, it means lying in a sleeping bag on hard ground, looking up at the stars. Others erect state-of-the-art tents to protect them from rain and bears. To some hardy specimens, to camp is to sleep hanging from a rock, wrapped in ropes and carabiners. Some people check into a four-star lodge with linen service and a view of mountains and waterfalls, and call that camping.
I have my own idea of camping. It involves just the right balance of comfort and discomfort, which I think is what most people like about camping. You feel like less of a civilized sissy, because you're colder and/or itchier and/or more sore than usual. You don't have your TV, and there are rustling noises out there that could be big hungry animals. You're pretty tough!
Even if you have a significant disability, camping lets you fancy yourself a robust and resourceful child of nature. But as I said, you have to plan.
You have to organize supplies and equipment. You have to research accessibility. You have to enlist other people into your project. And that means you have to plan for their needs too. You need enough food, flashlights, toilet paper, and beer for everybody.
Add two other family members with disabilities, and the need for planning multiplies.
Fortunately for me, one family member -- my partner Robin -- is extremely anal about planning. She made our site reservation way back in March, and within a day or two after that the site was booked for the whole summer. Thanks to her foresight, we were among the privileged few to stay in one of the Colorado State Parks system's wheelchair-accessible yurts.
Yurts? I can hear some of you asking? What the heck is a yurt?
A yurt is a good-sized tent, round and domed, constructed of wood lattice walls and a sturdy fabric covering. It was originally developed by the nomadic peoples of Central Asia, including Turkey and Mongolia.
In July, we camped in a yurt at Pearl Lake State Park, a real jewel of a park tucked into a lush valley in northwestern Colorado. With two sets of bunk beds and some floor space, the yurt had room for me and Robin and our daughter, and the three attendants who signed on for this working vacation. It was cozy, especially with two power wheelchairs, my oxygen concentrator and ventilator, commode chair, cooler, jugs of water, fishing tackle, and various other adaptive and recreational devices. But it worked.
The yurt didn't have a roll-in shower, an adjustable bed, an automatic door opener, or most of the other access features I have in my own home. Thus I could claim to be roughing it. The yurt did have the access features I really needed -- a ramp to enter; electricity to power said ventilator and oxygen, as well as our wheelchair battery chargers; and a lower bunk wider than the upper bunk so my attendants could transfer and dress me without constantly bumping their heads.
In addition to that seductive sense of valiantly going without (some of) my usual high-tech luxuries, our camping trip gave other gifts too:
Wildflowers, including columbines, cosmos, lupine, meadow rue, and yarrow, splashed their colors all around us. Lodgepole pines and firs loomed above us, and Aspen leaves fluttered like thousands of waving hands.
Our daughter, coached by my dad and by one of our attendants, got pretty good at casting a fishing line. She didn't catch anything, but she displayed amazing patience and concentration in the effort.
It's a proven scientific fact that all kinds of foods – potatoes, burritos, even marshmallows – taste better when cooked on a campfire.
Bright blue dragonflies danced by us on a regular basis, like itinerant magicians.
Late at night, we looked into a star-filled night sky whose depth we can't begin to perceive from an electrified city.
Best of all, we survived the wilds, and lived to tell about it.
Copyright 2010 by Laura Hershey
Making the Most of Election Season
Sure, it's annoying. Those dinnertime phone calls asking for your vote, your money, your time. Those mean-spirited commercials with no information about the sponsoring candidate, only that low creepy voice warning you of the opposing candidates' diabolical views. Those news reports about accusations, denials, and positional flip-flops. The endless, often contradictory and usually misleading polls.
It's Election Season.
My advice? Don't get angry, get involved. That's what I do.
With a disability like mine, some political activities are out of the question. I can't canvass neighborhoods, because most private residences are inaccessible to visitors using wheelchairs. I can't volunteer for phone banks without my own adapted telephone equipment, or without someone else to dial and hold the receiver. I can't contribute huge amounts of money, because my other disability is being not rich.
What I've learned, though, is that I can still play a role in political campaigns. So can you. What can we do? Just show up.
Woody Allen said something like, Eighty percent of success is just showing up. (Different versions of this quote float around the Internet.) I think that's right, if in politics "success" means having just a little bit of the impact that, as citizens in a democracy, we have every right to expect.
Okay, I'll admit, that sounded a little starry-eyed. I'm as skeptical as anyone about our dysfunctional version of democracy. It doesn't work the way it's supposed to. Shady, misnamed political action committees pay for deceptive ads, while huge special interests purchase strings that you know they'll be pulling later.
But I refuse to let my skepticism and dissent deteriorate into cynicism. I'll denounce corruption wherever it's exposed. I'll laugh at the outrageous satire of Jon Stewart and Stephen Colbert.
I will not, however, give up on the ideals of democracy, including civic participation and one-person-one-vote.
And that one vote – your vote, my vote, etc. – is something that the candidates still want. So make them earn it. Don't let them buy it with their dirty money. Let them know that you pay attention, and care about issues that they should also care about. How do you make this clear to them? You don't need a lot of expertise, money, or energy. You just need to be present sometimes. Be visible. Just show up.
Politicians, political organizations, and advocacy groups hold dozens of events in the weeks leading up to Election Day. Just last week, I attended two events, which is more than my usual average, but they made me want to do it more often. They were very different in size and type, but both gave me a chance to count as a citizen and a voter.
Last Thursday, Rep. Joe Rice, who represents my district in the Colorado General Assembly, held a pizza party at a local restaurant. I have to admit that what first got my attention was the promise of free pizza – my daughter loves pizza. But I also know Joe to be a smart and decent guy who does a good job in the statehouse. So I went, and also persuaded my partner, my brother and his family, and my parents to go too. (My daughter didn't need any persuading.)
It was a relatively small, friendly gathering – probably 60 or 70 people came and went at different times during the course of the event. In between, they ate pizza, salad and snacks, and talked to Joe. Most left with a yard sign.
That's what we did too. We enjoyed the food, but we also made our presence known. I introduced myself to Joe, and he remembered that we are friends on Facebook! (That's another way of "showing up" – make a virtual connection with the candidates if possible.) I took the opportunity to talk to him about Colorado's budget problems, and potential cuts in Medicaid programs. I mentioned that several other states are pushing through drastic cuts in home and community based services, threatening to force some people with disabilities into nursing homes. "Which is more expensive, and a lower quality of life," he responded.
I was glad to learn that my representative already had a handle on this basic concept, that home care is better and usually cheaper than institutional placement. But by seeing me and my partner, two visibly disabled constituents – and not just us, but also our family members who care about these issues too – he gets a powerful reminder that his Medicaid-related actions in the legislature will be noted by at least half a dozen politically engaged citizens of his district. Because it was a small gathering, our presence there made more of an impact.
The day before that, last Tuesday, a group of disability rights organizations including the Colorado Cross-Disability Coalition (CCDC) sponsored a gubernatorial forum. The forum was held in a large theater, with a local TV talk show host moderating. The two major candidates, John Hickenlooper and Don Maes, each spent an hour answering detailed questions, which the host had prepared in consultation with advocates. (The third-party candidate, Tom Tancredo, was invited but declined.)
This time, my individual presence was barely noticeable. What made my showing up so powerful this time was that over 500 members of the disability community showed up with me! Wheelchair users, crutch and walker users, blind folks, lots of young people and adults with developmental disabilities; as well as parents, spouses, attendants, friends – we nearly filled that big concert hall. The two candidates couldn't help but be impressed.
We keep talking about the power of the disability community as a voting bloc. We can expect candidates to understand this automatically. We have to show them our numbers, our interest, our commitment, our involvement. We have to show up.
Remember the immortal words of the late great disability rights leader Justin Dart: " Get into politics as if your life depended on it - because it does."
Copyright 2010 by Laura Hershey
My Wheelchair, My Body, Myself
by Laura Hershey
I don't know whether nondisabled people, or even the newly injured who are still getting accustomed to moving through the world in a wheelchair, can fully comprehend the connection between person and machine. When I'm in it, my wheelchair really does feel and function like a part of me. As such, I expect other people to give my wheelchair parts the same respect and/or affection that I want for my fleshier parts.
Here's what got me thinking about this: Last week I was getting on the city bus, heading home after a busy day. I backed onto the lift and the driver raised it. I started backing down the aisle toward the wheelchair space. Suddenly, from directly behind me, I heard a man's unnecessarily loud voice say, "I gotcha, baby sister!" Simultaneously I felt my wheelchair handlebars being gripped tightly, and pulled.
"No!" I shouted. Because I use a sip-and-puff tube to operate my wheelchair, my mouth was busy, so I had to keep my response short. "I got it!"
He kept pulling, and repeated, "I gotcha, baby sister!" He added, "I'm helping!"
By this time, the driver had converted the lift back into steps, and my attendant Krista had climbed aboard. She saw the guy yanking on my handlebars, and yelled, "Leave her chair alone!"
Perhaps he instinctively had more respect for someone standing, confronting him at eye level. He finally let me go, but continued to protest that he was just "helping."
Later, as I thought about this, I tried a thought experiment: What if a man came up behind an ambulatory woman and grabbed her tightly by both shoulders and started forcibly guiding her toward a seat? She would no doubt protest loudly, as I had done. If the man hesitated to release his grip, I imagine that another passenger might physically intervene. If a police officer could easily be summoned, the man might get a warning, or maybe even be arrested for assault.
For that's exactly what this felt like to me – an assault. It was a direct, physical affront to my person. This man wasn't just messing with some piece of equipment. He was interfering with my mobility, my power to position myself, to go where I want. My wheelchair is a part of my means of being in the world. In other words, it was part of me that he grabbed – my wheelchair, my body, myself.
Would anyone else recognize this? If I had tried to charge him with assault, would the legal system have supported me? Were other passengers aware of the depth of this violation? Or did they accept his statement that he was "helping" me?
It's hard to speculate about what other people are thinking, or about what might have happened if. But this uncomfortable encounter, with a man whose face I never even saw, did at least serve to remind me of the intense relationship I have with my wheelchair. When it's broken or unavailable to me, I feel limited in a way I never do when I'm in it. When it's working well, I move freely with its wheels and motors, and I interact with others from its comfortable seat.
I don't want other people to regard my wheelchair as public property, available to anyone who wants to use it for a foot rest, a topic of inappropriate inquiry, or a power trip.
But nor do I want them to view it as a barrier. That has also happened too many times. A few years ago, at the end of 10 days with a group of new friends and writers, our teacher was offering warm farewell hugs all around. She got to me, and hesitated. She wasn't sure what to do, how to navigate all the hardware in order to get close to me.
To her credit, she asked. I answered: "The left side works best. Come over here, and don't worry about leaning against the chair." It took some negotiating, but I got my hug.
Such qualms can be even more of a problem when pursuing romance. Potential partners who might have been attracted to me sometimes seemed put off by the physical presence of the wheelchair. Why? Maybe they saw it as an alien presence, a strange object that would always be in the way. Maybe they felt that it overwhelmed and diminished me, this big complicated contraption of electronics, wires, tubes, molded surfaces and customized supports. Maybe they had swallowed cultural stereotypes of wheelchairs as symbols of confinement, inability, immobility.
I know better. I know my wheelchair is part of me, and a part of which I am quite fond. It will change over the years – just like my other parts. It will even be replaced from time to time – just like all the cells in my body. There will be times when I fight it, times when I accept it. Sometimes we'll get along, and other times we'll be at odds.
Either way, the rest of the world better treat it right!
© 2010 Laura Hershey
Roles, Rules, and the Dance of Social Interaction: Managing the Presence of Attendants at Meetings and Parties
by Laura Hershey
Having attendants come in every day to help me with personal care, health support, and household duties isn't always easy. We have to adapt to each other's personalities, communication styles, habits. I have to work around their work schedules, and even though I set those schedules with them, it means that I can't always be spontaneous. Their presence compromises my privacy, though if they are respectful and careful, they don't invade it.
One of the issues I deal with is the presence of my attendants at work meetings and social gatherings. Often I need them to accompany me in order to assist with eating, drinking, and positioning. They are there, but their role is obviously different from my role there, and usually from everyone else's. Because they're there for me, I feel a double responsibility: to make them comfortable, and to make clear how I want them to interact in that situation. I sometimes struggle with both.
Work and social situations are different. Professional meetings tend to be more formal, and focused on a particular specialized topic. In such settings, I usually don't expect my attendants to participate at all. I often encourage them to bring a book to read while I'm busy. If I don't need them right next to me, I might suggest they sit in a separate waiting area, where they can read, text or talk on their phone.
For any significantly disabled person in the work world, managing the presence of an attendant becomes important. You need to present yourself as a competent, confident participant with a lot to contribute to the discussion. Even if you're not the facilitator or a main player, you want everyone to understand that you are the one involved in the project, and that your attendant is there to meet your support needs. While you do need someone around to help you with physical or sensory stuff, intellectually you're operating under your own steam. Unfortunately due to stereotypes of people with disabilities, some colleagues may incorrectly assume that this person who's with you understands what's going on better than you do. Or, without thinking it through that far, they may just feel more comfortable interacting with someone who is more like them, that is, not visibly disabled.
When this has happened to me, I have learned to intervene rather assertively. If a colleague asks my attendant a work-related question, I move forward and answer it. By now, all of my attendants know to deflect such interactions back to me. (In fact, they are often almost as annoyed by it as I am.)
On the other hand, I don't want them to feel as if I'm trying to make them invisible. When we arrive at a meeting, if I find myself chatting with a coworker for more than a minute or two, I introduce them to my attendant. If my attendant is going to play any role in the meeting, such as taking notes or turning pages for me, I introduce her to everyone, and explain what she'll be doing.
At social gatherings – parties, dinners with friends, and dates – the rules are a little looser, and more complicated. Again, my attendant's primary role is to assist me with whatever I might need, from giving me drinks of beer, to adjusting my ventilator settings, to driving me home. Unlike work meetings, there's no set agenda, no special expertise required. But the stakes can still be high. If these are new or potential friends, you want them to get to know you, not to focus on your assistant. On the other hand, people are people; mix them together and you never know who will connect and how. At parties and other convivial events, trying to micromanage or intervene in personal interactions is fairly futile and, worse, it's rude.
You can still have clear rules and expectations for your attendants at parties. It's perfectly reasonable to require that they be attentive and available to assist you when needed, that they stay sober, that they respect your confidentiality, and so on. Keeping them from talking to people, though, is more trouble than it's worth. And it may demonstrate an undeserved lack of respect.
When I was much younger, I would sometimes get jealous of my attendants who, back then, were more likely to be my age peers. (It's much different now; some of my attendants are literally young enough to be my daughters!) At college parties, my attendants would seem to talk so easily to my classmates, whereas I was shyer and more insecure. Once or twice I got angry at them, feeling as though they were butting into my social life. Of course they weren't really trying to do that. They were just doing what came naturally, chatting with people in a casual atmosphere while they worked.
As I've matured, I've learned that the best approach to social situations is to relax, to be myself and to let my attendants be themselves. In business situations, we both have to behave somewhat differently. I've learned to guide and then to trust my attendants, to make my expectations clear. In both situations, I recognize that I have to rely on myself to make the kind of impression I want to make.
I'm always interested in knowing how other people handle these situations. What's your approach?
Copyright 2010 by Laura Hershey
Fairness for Attendants: Enacting Justice in an Unjust World
by Laura Hershey
Frontline disability support workers, particularly in-home attendants funded by Medicaid and similar public programs, for the most part get a raw deal in terms of wages, benefits, and opportunities to organize. Ironically, considering the high demand for such workers, there are still few material rewards to attract them to the field.
Perhaps that will change, driven by demographic factors. More Americans are getting older and needing assistance with daily living activities. Openings for home health aides and personal care attendants are expected to increase rapidly over the next couple of decades. That demand for labor should be leveraged into demands for labor rights. Those of us who need the services should join forces with the workers, and find ways to create more just systems of service and employment. Whether someone does attendant work as a career, or as a transitional job between careers, or to support themselves during college or grad school, he or she should be able to expect some basic employment benefits and rights, such as a living wage, cost-of-living increases, merit raises, health care coverage, paid sick and vacation days, relevant educational and training opportunities, the right to organize politically to advocate for their rights (such as by forming a union), and community respect for their work.
Until the day our workers do enjoy these rights and benefits, people with disabilities who employ and/or supervise them can, and should, do what we can to create the fairest possible working conditions now. We can begin enacting justice in an unjust world.
How do we do that?
We can start by acknowledging the profound disconnect between the importance of the work and the compensation it offers. In understanding and analyzing this, we can call upon a radical understanding of how disability justice and worker justice intersect. Providing hands-on personal care has acquired over the years an aura of sentimentality. People are assumed to do such work out of pure compassion (which translates as pity), or because "it's so rewarding" (rewarding in a vague, emotional, non-material sense). Within this framework, disabled people embody neediness, while support workers cheerfully fulfill our needs. Disabled people are passive objects of support workers' active "caregiving."
This construction of attendant work has a wide and deep hold on the consciousness of the public, and of many workers and clients. I can't count the number of job applicants who have told me that they wanted to be my attendants because they "love to help others." This response always troubles me because it would seem to premise my critical support services on a unilateral feeling, rather than on a mutually beneficial arrangement and mutually understood expectations. And I know people with disabilities who also participate in this drama of altruistic caregiver tending needy patient. Perhaps they do so because they hope for a guarantee that their needs can be met through emotional manipulation, in the absence of a stable workforce.
Don't get me wrong. I do not discount the reality of a feeling component in the interactions between disabled people and their support workers. Ideally, these include feelings of respect, and the kind of affection that grows among people who work together cooperatively and productively. I enjoy conversations with many of my attendants, and I care about their well-being. But to base the entire arrangement on emotional "rewards" is misleading and dangerous, because it ignores the need for economic justice for workers, who can't pay their rent with gratitude. And gratitude itself can be destructive, if too excessively wanted or given, because it creates a power imbalance. If personal assistance is a favor, then a provider can give it or withhold it according to whim; and giving it earns no particular claim of recompense. These traditional, still prevalent notions of "caregiving" deny justice to both disabled people and support workers.
Based on this radical understanding and commitment to justice, we can actively counteract the oppressive model of personal assistance as an act of kindness rendered to the less fortunate. We can replace that model with a more just model, in which workers with a particular skill set and interest – perhaps an interest in "helping" to maximize independence and efficacy for people with disabilities, or perhaps just an interest in doing practical and useful work – provide a necessary and valuable service, and the recipients of that service provide valuable rewards in return. In this framework, the role of the recipient and the role of the worker are distinct, well-defined, equally valued, equally empowered, and non-oppressive.
I urge all of us – disabled people and the home care workers who work for us – to advocate systemically for our own and each other' overlapping interests. Join advisory committees for state Medicaid home and community based services programs. Serve on boards of directors of nonprofit agencies providing home care services. Help develop, expand, and strengthen consumer-directed attendant programs. Get involved in budgeting and rate-setting discussions in state legislatures. Campaign for progressive ballot issues and candidates. Organize rallies demanding improvements in home care services and working conditions.
As we work to bring about systemic change, we can also implement a vision of justice, day to day. Rather than focusing on the relative political powerlessness of people with disabilities, I choose to discuss how we can proactively position ourselves as active agents, making decisions and taking actions that improve working conditions for our attendants, in large and small ways.
Below are some ways I try to create a positive employment environment for my own attendants. I offer these strategies to other justice-minded disabled home care users.
Respect attendants' professional abilities, and utilize them appropriately. Some client supervisors, or their families, assign their home care workers to fulfill roles that they never signed up for. Several home care workers have told me about other jobs where they seemed to be expected to babysit adults, provide emotional support, be a friend or confidant, or substitute for a real social life. Some attendants will try hard to fit the bill, but in the long run such confusing demands can become very difficult.
Make expectations clear. This is obviously good for the disabled employer, because it enables us to explain and get the services we want. But doing so is also very important for the morale of home care workers. If workers don't know what they are expected to do with their time, they will have the stress of worrying that they are not doing what they should be doing.
Treat workers equitably. Don't let one attendant slack off frequently on cleaning the kitchen, leaving messes for the attendant working the following shift. Also, implement the same policies across-the-board regarding tardiness and absences; consequences for last-minute cancellations should be the same for everyone on staff.
If you have any control over wages (as we do in Colorado's consumer-directed program), ensure equity there too. That doesn't necessarily mean the same rate for everyone. It may be reasonable to pay differential rates for early mornings, late nights, weekends, shifts that involve much harder work such as multiple transfers, and so on. It's also appropriate to give regular raises based on seniority and merit. But make these consistent, based on fairness and not favoritism.
© 2010 Laura Hershey
Sex, Ableism, Disability, and Revolution: an interview with Bethany Stevens
[Note from Laura Hershey: I've been friends with Bethany Stevens for several years. Recently she came to Denver to present at the National Women's Studies Association annual conference. She agreed to sit for an interview with me. Our discussion was wide-ranging and frank. Compared to my earlier blog entries, this one is quite a bit longer. I considered editing it down to a much shorter format, but the ideas and information it contains are complex, interconnected, and valuable, and editing would disrupt the flow. This blog entry features adult material; please read with that in mind.]
Hershey: So Bethany, I want to talk to you about your work in the area of sexual health and disability. I know you have a Masters degree…
Stevens: I have a Masters degree in Sexuality Studies from San Francisco State University. It was largely theoretical-based, no real biology, and nothing very practical either. It was fun to theorize.
Hershey: Prior to that you had gone to law school. You passed the California bar. What made you interested in switching from the law to sexuality studies?
Stevens: One, I lost faith in the law, just by studying it. I was naïve going into law school. I thought I could change the world through the law, and I lost faith. I also hosted a conference on disability and sexuality at the University of Florida in 2005, and I really enjoyed talking about sex. It was a hot-podge of people, and a really great after-party. I learned from that that I much prefer reading and talking about sex, than the law.
Hershey: And now you are a faculty member at Georgia State University in Atlanta.
Stevens: That's correct. I teach a "Disparities in Sexual Health" course in the Masters in Public Health program. I'm looking at disparities created by power structures, like racism, genderism – which is an umbrella term for sexism, homophobia, transphobia – ableism, and classism.
Hershey: And you also teach classes on disability studies?
Stevens: Yes. Well, one of them is disability and health, so I'm not really allowed to teach disability studies. But I do.
Hershey: What do you think are some of the issues, barriers, challenges facing people with disabilities in reaching sexual expression and fulfillment?
Stevens: I think there are many things: paternalism, ableism… this really messes with our desire. Because we're internalizing ableism we don't see ourselves as desirable, don't think other people can find us desirable. Ableism also impacts other people, because they actually believe those narratives that we are asexual and not desirable. So it really is that power structure. We can also look at more basic structural things, like not having access to reproductive care, sexual health care; doctors not even asking us the questions, not taking a sexual history, really believing and assuming that we are asexual.
Hershey: What are some good ways for people with disabilities to advocate for their sexual rights?
Stevens: I would love more people to talk about it. I think dialogue is an incredible tool. I think we don't want to talk about it. Barbara Waxman's piece, "It's Time to Politicize Our Sexual Oppression," from 1991, pretty much all of those issues are the same today. Except sodomy is now legal, thank goodness, since 2003. Yay sodomy! So I just think we should be talking to each other. We should be talking about sexual shame. I think it would open up a space where we could actually start working through some of these issues that are entangled in our bodies and our minds. You know, how oppression becomes embodied, and how we can take it apart together.
On a more practical level we should include in our actions, and whatever we are talking about in these activist arenas, really getting these conversations going. Also, calling doctors out when they don't ask us about sexual health. Were still stuck in our silence around sexuality – which is a broader social issue.
Hershey: Do you think it's harder for people with disabilities to talk about it, or is it hard for everybody?
Stevens: It's hard for everybody. But living at the nexus of disability in sexuality, which are both silenced culturally, and difficult to talk about, which is something that pushed on us by ableism, makes it hard to talk about. But all the more impetus to do so. I know there are people working on it, like Amber Smock and FRIDA,
I know there are more meritorious issues to be fighting for. And I do understand that. We do need places to live, and jobs to have, and attendants, and to get out of institutions. Those are all really crucial issues. But I think at the heart of disability stigma and oppression, ableism, is just this belief that we are asexual, because it fully dehumanizes us. But you can see that I'm sex-focused, so [laughing] I locate the nexus of ableism in sex. That's my own baggage – or my gift.
Hershey: I know you also do some writing and presenting on disability and queerness. Do you want to talk about that?
Stevens: Well, I look at it from the point of view of the queer body as any body viewed as "the other." For example, today I presented with my friend Sonny Nordmarken about coalitional politics between queer-bodied people, so anybody deemed "the other." He's a trans guy, I'm a person with a disability. So we talked about how those power structures, transphobia and ableism, express themselves very similarly, like with micro-aggressions, staring, hate crimes…
Hershey: Did you just say "micro-aggressions"? Could you just talk about that term?
Stevens: Yes. "Micro-aggressions" – my favorite new word. It started in education journals, looking at African-Americans in college settings, in how they are experiencing these daily commonplace indignities – statements like, "You speak so well"; or looks like, "You don't belong here," or, "What are you?" This framework has expanded, and now many scholars are looking at it in other ways, and I just made the link to disability because it made so much sense. And so we're seeing it in the commonalities of our narratives, trying to build coalitions to see those commonalities between our identities, and across identity lines, so we can see that micro-aggressions, the staring or intrusive questions about our bodies, there's a disproportionate amount of hate crimes in our communities, and just structural exclusion from all kinds of areas of life. So what we're trying to do is create a guide for people to build coalitions, and talk about how emotionally it's difficult, but how rich it is to see commonality like how we've hurt each other by me expressing transphobia, and him [Nordmarken] expressing ableism, and working through those things to get to a place where we can actually support each other. We've presented on this three times together.
We've just added the discourse of love, which I'm really interested in. Because I think it goes beyond pride. I hope we can actually figure out ways to love ourselves. I'm going to build on my love for my community, and the love rhetoric.
I spend a lot of time just talking about social determinants on sexual health for people with disabilities, just looking at how ableism impacts our sexual lives.
Hershey: Do you have some concrete examples of that?
Stevens: The definition of sexual health says you need a sense of well-being in all spheres of your life: emotional, physical… And "well-being" doesn't have to be "able." So just looking at how micro-aggressions make us feel shame, and make us feel less desirable, just these experiences of being excluded – not being welcome to parties, because they're not accessible; not being able to pee there. Houses that aren't visitable, so you can't #### there. All the ways that ableism expresses itself, that are not as concrete as mammogram machines not being accessible, or someone's not taking a sexual history. I think it so much broader than that. Back in San Francisco – of all the sex parties, none of them were accessible! None! Just thinking about that, and how when you're in a bar, nobody approaches you unless they're going to spew paternalism, or try to baby-talk and feel good about themselves! All of these things are ableism, and we internalize them. I believed that #### for too long. I bought into not feeling desirable for many years.
Hershey: What teaches us that?
Stevens: Every institution that shapes our culture: media, our parents, each other. We all learn these systems, and we all teach them to each other. We all learn what the perfect body looks like, and we all try to fit in to it, and most of us can't. "Normalcy" is a broader problem, that really hurts so many people. I think parents buy into ableism, and I think that's because disability is presented to them as a medical problem. There's a lot of hysteria around, trying to cure us, trying to fix us. And the media is huge. How often do you get to see hot disability sex? It is rare! I would like to make a documentary that's hot and intellectual, talk about some of these issues and also show some sex images.
Hershey: Do you have anything you want to say about sexual and romantic relationships between people with disabilities, and relationships between with and without disabilities?
Stevens: Yeah, I find it interesting. I've been doing some workshops with People First, which is an intellectually disabled-focused self-advocacy organization, and I knew before I started working with them that people would be asking me how to find an able-bodied partner, and I didn't really know how I would deal with that. So I called some people [at the University of Illinois at] Chicago, because they have a sexuality consortium focusing on people with intellectual disabilities. They didn't have the answer, because it didn't, much for them. But for me it came up over and over. I'm still trying to figure out how to explain, in a really accessible way, how that's internalized ableism, because if we can't find each other desirable, how can we expect other people to? Not that I think we need to be together always. My partner – she's able-bodied, but she's definitely got some impairments that she's dealing with. I think there's a lot of beauty being with a disabled person. I've had some really wonderful experiences, because there are a lot of conversations you don't have to have, Disability 101. There is a commonality that just really beautiful to tap into. But something about being in love with a nondisabled person has helped me see how I have internalized ableism. When she tells me I'm really beautiful, I can't believe her all the time. It's a really interesting dynamic, and I think a lot of that is just love opening up a door. And there's different perspectives, like when we go out in public, and she's assumed to be the attendant. And also people saying that she's brave or courageous for dating me. There are different micro-aggressions that are expressed that make it an interesting and challenging, but beautiful, experience. On our second date, we had someone come up to us and tell me that he found me attractive, and then he turned to her and asked if that was weird. But going back to disability-on-disability, there is so many people in the disability service industry who have pushed people with disabilities away from each other, because of the stigma that we shouldn't be together, because the stigma will spread. We're supposed to be valued, that Wolf Wolfsensberger social role valorization idea, that we're supposed to disperse, and be with people who are dominant culture people so we can actually be more socially valued. I think that's all ####. I think they're actually pushing people away from any sort of reconciliation with disability. If you can't find another person with a disability attractive, people really need to ask why that is.
Hershey: You told me yesterday that you have 96 undergraduates in your "Perspectives on Disability" class.
Hershey: I assume that most of them are nondisabled?
Stevens: That's correct.
Hershey: So, as a teacher, how are you trying to change how they think about disability, and how do you know when you have succeeded?
Stevens: Well, the undergraduates are a hard road to toe. They are all over the place in terms of age. I have people who are older than me, and people who are just starting college. And they are all different majors, because everybody at my school is required to take a "Perspectives" class in order to graduate. It's a two-credit class. A lot of them are there because of the requirement, and that's fine. A lot of the issue is just trying to get them to understand the social constructed nature of race and gender and disability, and how all these things intermingle. So this semester, I tried a new method, and I think it actually worked. I started out with media analysis using music videos, something that many of them are already consuming anyway, and just trying to break apart sexual, gender, and racialized narratives in those scripts, and then move into disability media, just clips of, like, Liz Carr doing some comedy, a scene from DV8 where they're dancing, a Sins Invalid piece. I push them to see those scripts, and I teach them media analysis. I think that has helped start the framework. But after a whole semester, a lot of them are still writing about how sad these handicapped people are. So basically I can't reach all of them! And that's okay. Something I learned last semester is how to let them fight with each other, instead of me fighting with them, because they don't listen to me as much as their peers. So for example when I [assigned] your article, I had a guy ask if the purpose of the class was to understand that disabled people are bitter, and that we're angry at able-bodied people. And I didn't answer it! I just asked other people to respond. And because we'd started out looking at race, gender, sexuality, and seeing those power structures as parallels, and building on something that they already know, I had a few African-American in the class who were just like, "Look, just because we talk about discrimination, doesn't mean we're bitter; it just means we're vocal, and it's important to say these things." So it was nice to have them counter each other. There are a lot of people who get it, and whisper to each other in class, and get angry when people say offensive things. I leave the class not exhausted anymore, because I don't fight. And how do I know when I'm reaching them? Just small things, like when they check each other, and call each other out on wrong language – like talking about how "retard" and "lame" are hate speech. Seeing those parallels between racism and ableism.
Hershey: A lot of the readers of this blog are from the spinal cord injury community. I'm just wondering, particularly for more recently injured and disabled people, what advice would you give about sexual health?
Stevens: My advice would be the same as to just about everybody else, and that is just to think outside the box. Stop thinking about sex as what you've seen on TV – that it has to be spontaneous, that you need to stand up and be pressed against a wall, that it has to be heterosexual, it has to be unsafe, that you don't need to be negotiating or communicating. I would just encourage people to talk to each other! A good tool to start analyzing the spaces of the body that can feel pleasure if you've lost sensate capacity in parts of your body, is to try a game with yourself, or with your partner, and just figure out your pleasure topography. Go over your body, and feel where you feel pleasure. Try different touches, pressures, different types of things – feathers, anything. It's a fun practice to learn with yourself. I definitely think masturbation, and touching and feeling your body, is a teaching tool. Doing it with a partner is also really teaching, because we have different body languages, we like different things, regardless of disability, ability, whatever identity group we're in. So really, just figure out what's going on, instead of fumbling around without communication or anything. Also, I think really useful, I just read this book, Urban Tantra: Sacred Sex for the Twenty-First Century, by Barbara Carellas. It's disability- and trans-inclusive. It's about using breathing, and concentrating your energy to allow yourself to have pleasure. It's really accessible to read. Just slowing down, knowing that your breathing can enhance your sexual experience when you've lost sensation. I just met a guy with a spinal cord injury in Berkeley, the last time I was there, and he was quadriplegic, and he'd studied tantra before, and he was still doing tantra. He has really managed to re-focus his sexual energy to his thumb, and people could suck on his thumb, and he could have an orgasm. Really reshaping what the orgasm looks like, and feels like, is useful. But it's not innate. It's like learning how to speak to people in a public setting. I don't think these are natural gifts to many of us; we have to practice. But practicing sex is good, either by yourself or with others.
Hershey: Is there anything else you want to talk about?
Stevens: Well, the other reason I got into sex was that I lost Carl to suicide. He was someone that I met in Norway in 2004. I really loved him. The reason he committed suicide was that he had a spinal cord injury, and he had lost sensate capacity, hadn't been able to have a natural erection, and couldn't figure out how to feel like somebody who could give or receive pleasure. She confessed this to me before he killed himself. I just think that's such a waste. That's why those conversations are so crucial. Like even in Murderball – which is just heteromasculinity to the ceiling – but at least there was that whisper of sexual revolution, that conversation that you can still have, given quadriplegia after a spinal cord injury. Just having those conversations, so people don't have to die! It just shows that ableism, and disability stigma, and all those ideas about asexuality, are harmful psychologically, and can kill you! And so that's why we have to talk about them, because they're just going to stay cloaked in silence. And we're going to be afraid! I read a few blogs on the Christopher Reeve page, by people with spinal cord injuries, and how that's made them feel not desirable with their partner. I think a lot of it could be avoided by just having conversations about how to move through that discomfort with sexuality, into some space of cognitive revolution.
Hershey: Thank you very much. I appreciate it.
Stevens: Yeah, thank you!
© 2010 by Laura Hershey
The Good and Bad of Gratitude by Laura Hershey © 2010
During Thanksgiving season, it's time to talk about gratitude. This is a tricky subject for people with disabilities. It has its pros and cons. The positive is that there really is so much to be grateful about, and doing so helps us feel good and live well. The negative arises out of a whole history of exclusion and power imbalances. I'll start with the things that make me feel grateful.
I'm grateful for my partner, Robin Stephens. We totally stress each other out at times. Have you ever been in a 20-year relationship? It's not easy. But when it's good, it's really amazing. When I was young and single, my favorite song was Cat Stevens' "Hard-Headed Woman." The music was melodic, the lyrics were beautiful and something told me they were true.
I'm looking for a hard-headed woman,
one who will make me do my best.
When I find my hard-headed woman,
I know the rest of my life will be blessed.
I found mine, and yes, the rest of my life has been blessed.
I'm grateful for our daughter, Shannon, who entered our lives and our home only recently, and has transformed my existence in explosive, unexpected, absolutely wonderful ways. As I write this, we are in Southern California on a family vacation. I have watched Shannon's pure delight at dancing in the ocean for the first time ever, collecting seashells, writing in the sand, riding the carousel at Santa Monica Pier, having buffet breakfast with Mickey and Minnie Mouse and Goofy and Stitch, touring Disneyland, and watching fireworks from our hotel balcony. I've always loved traveling; sharing that with Shannon makes it so much more fun.
I'm grateful for my family of origin too, my Mom and Dad and brother John, who raised me well, and continue to be an important part of my life. I'm also grateful for Robin's mom Nancy, who lives in San Diego but stays connected with us through phone calls and visits. She's with us here in our hotel, and in fact, she generously arranged it for us through her timeshare membership.
I'm grateful for the disability community. It's diverse, dynamic, fractious, cantankerous, complacent, focused, distractible, powerful, pressed-down, and always enduring. Its members sustain me in critical ways. Disability rights groups such as ADAPT and the Colorado Cross-Disability Coalition and Not Dead Yet defend my rights to public transportation access, entry to local businesses, attendant supports, Medicaid coverage, and LIFE. Disabled women and queer folks and people of color engage me in understanding intersectionalities among gender, race, and disability oppression, and the need to move beyond rights toward real justice.
I'm grateful specifically for the artistic disability community. It feeds my creative soul, and validates my own efforts at writing poetry and creative nonfiction.
I'm grateful for disability services and support programs that help people live better, integrate, and participate, though they often fall short. I'm grateful for the advocates who try to keep those programs honest, though they often fall short too.
I'm grateful for my body, though it often falls short. It's always had its "issues," to use a euphemism, and as I age these are multiplying. But it's who I am and how I interact with the world and other people and myself. My body hurts me and limits me more than I would like. It also receives and processes art and music and ocean breezes and delicious Vitamixed food. It sends out my voice, my voice of request and direction, my voice of protest, my voice of poetry and prose, my voice of desire. My body is my spirituality, it's all rooted right here in my skin and gut, in my clitoris and tits, in my real, weakly-beating heart and my squishy gray brain.
I'm grateful for my spectacular attendants, who meet my needs skillfully, support my choices, bring extremely useful additional talents to their jobs, such as wheelchair repair and culinary art. Four of them have made this trip possible, successful, and comfortable, despite some difficult disability-related and travel-related conditions. Of course I'm also grateful for the Medicaid program that pays for their services, without which they wouldn't be here at all, and neither would I. I'm also grateful for the Medicaid "work incentive" rules which enable me to write and consult, earn money, and still keep these services.
I'm grateful for many other things. I'm grateful for my house in Englewood, Colorado. I'm grateful for my "life support" equipment – my ventilator, sip-and-puff wheelchair, and Dragon NaturallySpeaking by which I send this blog post out into the world. I'm grateful for the other writers with whom I've developed exchange-and-critique arrangements, like Michele and Kathy, and also the Lambda Lovelies.
So now for the dark side of gratitude. All too often, people with disabilities are pressured to feel gratitude for things that are their basic human rights – subsidized housing, support services, inclusion in the community, basic acceptance and respect. Some people think that disability is a drain on the economy, and an imposition on others. They don't want to be reminded of the prevalence and inevitability of disability in any society, in any person's experience or family. In response to this deep discomfort, they try to impose conditions on anything "given" to people with disabilities – conditions like passiveness, submissiveness, limited demands, and constant thank yous.
We have to demand the things that are essential to our lives, equality, and quality of life. We must refuse to feel gratitude for these, except the normal level of gratitude that anyone might feel for living in a time and place that still supports human life. We can't succumb to feelings like embarrassment or shame regarding our needs, even if those needs are more extensive than the average person's needs. That will only reinforce and perpetuate our inequality, and the pulling away of vital state- and federally-funded support services.
Gratitude is natural and healthy, but should never be obligatory. Identifying and sharing our real sources of gratitude is a good counter-balance to the tendency for self-destructive gratitude.
© 2010 by Laura Hershey
Blessings to All, In Joy Candace